​​Action For Hydrocephalus

​​Registered Charity Number 1169606

Getting diagnosed with hydrocephalus when I was twenty-six with no known cause came as a huge shock. Living in the United Kingdom has meant that I've had access to the best surgical care as soon as I've needed it. Twenty brain surgeries down the line, I may be no expert in treating hydrocephalus but I'm pretty good at knowing what it feels like to have it; it's a horrible thing but when treated, a relatively normal life can be lead.  I've been very lucky; knowing that so many thousands of children don't have any access to treatment at all has made me want to try, even in a small way, to turn that around.

Lewis Thorne, Consultant Neurosurgeon & Co-Founder of Action For Hydrocephalus

Mr Lewis Thorne is a Consultant Neurosurgeon at The Wellington Hospital and The Royal Free NHS Trust and the National Hospital for Neurology & Neurosurgery in Queens Square. He graduated from Edinburgh University in 1995 and completed his postgraduate training in London. He has a special interest in the management of brain tumours, awake surgery and spinal surgery. 

Shunt/Neurosurgical Equipment Donation Scheme. This is how we started out a couple of years ago; passing on donated shunts (usually just outside their expiry dates) to areas lacking in equipment.  Now customs laws have changed so we can only accept items within their expiry dates but this hasn't prevented us sending thousands of pounds-worth of shunts, tubing, retractors, dissectors, gigli saws and other vital equipment to locations including the Go Vap orphanage in Vietnam and also to Kenya, Uganda and Ethiopia.  We work hard to ensure the items reach those truly in need and that every single item donated is put to its intended use.  This scheme has literally meant the difference between life and death for infants and children in areas where these most basic surgical items are simply not available or too expensive for families to pay for.

our projects

Greg James, Consultant Neurosurgeon

Diagnostic Aids: Our aim is to not only improve the actual treatment of hydrocephalus but to help educate about the condition too.  Families living in rural areas do not have the luxury of local healthcare facilities and ignorance about hydrocephalus and its symptoms can result in many late presentations, often when it is too late to save the child.  We are designing and testing simple diagnostic aids for families in such areas to enable them to correctly assess their children themselves, prompting them to seek medical care as soon as the symptoms arise.  This will help educate families about the condition and will also reduce the number of inoperable cases, thus giving opportunity to those with the condition rather than no chance at all. 

​meet our team

Jordan Adams, Co-Founder of Action For Hydrocephalus

As a consultant neurosurgeon at Great Ormond Street, I am fortunate to work in one of the world’s leading and most technologically advanced children’s hospitals. Working with children affected by hydrocephalus and their families is one of the most rewarding and fulfilling aspects of my job. With modern treatment, hydrocephalus should no longer be a life-limiting or restrictive condition and the majority of our children go on to live a full and happy life. I hope to bring, through the work of this organization, some of this success in treating hydrocephalus to children born without easy access to hospitals like GOSH.

Neurosurgeon Training Scheme: One of the primary reasons the death rate from hydrocephalus is so high in developing countries is the lack of qualified neurosurgeons to perform the relatively straightforward surgeries to treat the condition.  In 2009, there was only 1 neurosurgeon in the whole of Ethiopia (to treat its entire population of over 80,000,000).  Thanks to recent training programmes, 25 neurosurgeons are expected to be qualified there by the end of 2020.  This is still no way near enough for such a huge population but it is a fantastic and crucial move forwards.  We work with Reach Another Foundation, our partners who have facilitated these training programmes and we are currently developing a training exchange between our UK hospitals (primarily the National Hospital For Neurology & Neurosurgery in Queen Square and Great Ormond Street Children's Hospital) and those in Ethiopia.  By providing training opportunities for doctors coming to the UK from overseas and teaching opportunities for UK doctors travelling back to provide teaching and advice, we can strive towards a secure training and learning foundation, helping to increase the number of neurosurgeons. If this is successful in Ethiopia, our long-term plan is to roll the training exchange out in other countries also lacking in qualified surgeons.